Backstage

For most evening events it happens around 1pm. The trucks begin to arrive and the once cavernous arena comes to life with loud thuds and shouts echoing across the stage.

“Sound check! T-minus four hours! Move your ass!“

If it was a Saturday show I was psyched. It meant I could work load-in and watch barely two dozen stagehands construct the most sophisticated sets and lights with stairways, exploding elements and speakers each the size of a greyhound bus. It meant all day backstage watching the contents of three or four trailer trucks choreographed with miraculous precision into a seamless 90-minute dance of pure showbiz magic.

I loved my time as an event security supervisor. A huge departure from my 9-to-5 in finance, it was exciting and strenuous work. And on occasion it was a little dangerous. But nothing could have kept me away. I had the unique experience of sitting right in front of a small theater performance by Dave Matthews Band, it was my job to drool over Dave inconspicuously while keeping the rest of the ladies from attacking him. No complaints about that. I shook hands with my idol Sarah McLachlan (I used to be a singer, too, and LOVE her music) and I had the opportunity to tell her how much her talent meant to me. Over the years in that business, I enjoyed meeting many talented people who inspired me. I learned so much about what it takes backstage to pull off a performance that people can really be inspired by, not just entertained. An evening that will stay with the audience forever, a true lasting memory.

So here I am today. Working backstage once again, but this time it’s a very different venue. A Congressional briefing. Congress. Pause. Breathe. Yeah, seriously – CONGRESS. ME. How the hell did I get through security HERE?

It started in a very unlikely place. Not on Capitol Hill, no millions paid to lobbying firms. It started in someone’s living room in Connecticut. With one Congressman. And one family’s story. Ours.

Way back, what seems like lightyears ago last February 2011, SGM and I attended an evening of discussion between families living with autism and our Congressman, John Larson (D-CT). I had already done two of these kinds of events with other Congressmen in Connecticut and at each I had walked away feeling good that one more legislator had now heard about the unique challenges facing military families with autism. But this exchange was different. Something beyond bending the Congressman’s ear had taken place. He was moved by the numbers. 1 in 88. He was shocked by the lack of access to care. Less than 10 %. What likely stirred him the most was that my husband standing beside me, having served twenty-four years and three overseas deployments, could not retire because he would lose what little services are available to treat his daughter’s autism.

A few days later, a phone call from Congressman Larson’s staff: “Can I ask you some more questions?” Ask me anything. I have been waiting so long to tell the world. “How does a military family go about getting autism therapies through TRICARE?”

OMG. Seriously? Do you have a few hours?

“Well,” I began, “it amounts to jumping through flaming rings of fire while blindfolded with your feet and hands bound with duct tape while your child with autism is left spinning in a corner and your husband dodges IEDs in Afghanistan. Do you want to hear more?”

And so it began. By June, Congressman Larson’s staff and the Government Relations team at Autism Speaks along with myself and Marine Corps Warrior Spouse Karen Driscoll had finished the draft language of a bill and it was now ready to drop.

The several months that followed felt like a kick in the throat. We rode a rollercoaster through the debt-ceiling crisis in August, threats to cut the defense budget and then it was the holidays and Congress was on recess. I had been told more than a few times that this bill’s chances were plainly slim-to-none. With all of the budget cuts looming, our military families with autism just weren’t on the radar. This show might get cancelled before it even begins.

But I still showed up to work backstage. I felt it was my duty. I still asked folks to contact their member of Congress and ask them to support HR2288 – the Caring for Military Kids with Autism Act (CMKAA). I couldn’t give up. I had some help, too. Diary of a Mom, Try Defying Gravity, Hopeful Parents, Lou’s Land, stark. raving. mad. mommy. and RANTS FROM MOMMYLAND, just to name a few. Like professional stagehands, the coordination was incredible, the focus and dedication to making it all fit together was impressive. The set being constructed was coming along.

Autism Speaks stepped up in a major way and began putting the word out about the bill. They highlighted our efforts on Pearl Harbor Day with Autism Votes creating an Action Alert with easy access for people across the country to contact their legislators and ask for support of CMKAA. We now have 35 Cosponsors from both sides of the aisle agreeing that our military families are deserving of treatments for their children with autism.

Backstage over the last several weeks, a handful of us military parents who signed up for load-in have been calling members of Congress to personally invite them to this briefing. We have politely badgered some staffers more than once. Personally, I have tweeted and facebook’d the crap out of every Member of both the House and Senate Armed Services Committees. Because we need an audience for the show to go on.

On Tuesday, the lights will go up in a room on Capitol Hill filled with superstars from across the country. You might recognize of few of the names on the set list, but I doubt you’d know the major stars until you hear their stories. But trust me. Their stories will have you on your feet screaming for this bill to pass. It’ll be an event that stays with you for a lifetime. I know it will stay with me forever. I have never worked so hard on a backstage load-in.

So what do I wish most for people to learn from my story?

That it is the backstage crew that makes the magic happen. That EACH AND EVERY PERSON can make a difference by speaking up. That working backstage might be the most life-changing job you will ever have.

I want you to hear that a stay-at-home-mom (or dad) who hasn’t earned a paycheck in nearly ten years can DO something just by sharing their story.

Backstage is where it all begins.

[To learn more about the Congressional briefing on Autism and its impact on our military families, go –> HERE <–. You can read the copy of the bill and find out ways to support CMKAA –> HERE <–. Thank you!]

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About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.
View all posts by Rachel Kenyon

A thank-you from one military mom to another (and everyone else who has been working alongside you) does not seem sufficient but here it is anyways. Thank you so much! Can we have about a 100 more of you to advocate for military families please. What you’ve done to get us this far is nothing short of amazing. Wish I would have stumbled upon your website sooner. I’m inspired and will be joining you with some fellow military families in DC tomorrow to show support. It will be amazing!

[…] mission. His voice was certain and his words were deliberate. He spoke of our conversation last February 2011 and the impact our families’ struggles had on him. He heard and listened that evening and […]